Who cares for the carers?

This is the question that Euan asked me at midday today, as I melted into tears of anger and frustration, only 36 hours after my return from an amazing week on a creative retreat. Surely, after such a special time away, I should be restored and energised and ready for anything that my caring role could throw at me? And yet, as soon as the calls and visits and simultaneous unexpected demands on my time and resources kicked back in (on top of the only to-be-expected quotidian carer's round), I felt surging overwhelm, and waves of exhaustion and panic washed over me.

Care, caru, chara

• ‘Care’ originates from the Old English word ‘caru’, meaning sorrow, anxiety, grief and the Old German word ‘chara’, meaning lament or a burden of mind

Perhaps it is helpful at this point (and in my own defence) to go back to April, when my Carer's Assessment - quite unexpectedly - resulted in our social worker deeming me to be at 'extreme risk' and I was awarded the equivalent of 4 weeks' annual respite (costed at the price of a week's stay for Euan in a local care home each time). I wept.

'Extreme risk'

But in the months since April it has been impossible to spend that budget, due to a shortage of care staff. Repeated requests for a day here or a night or two there were turned down at the last minute, raising and dashing my hopes along the way. Finally, lovely Sally (everyone needs a Sally) took things into her own hands, cleared her diary, and the plan for me to head off to the creative retreat took shape. Sally would pull on her trusty yachting dungarees and move in to care for Euan, enabling me to go away to spend a week doing something I deeply love. Sounds good! Except that, due to the repeated failures to secure respite prior to this, I was so exhausted going away that it was hard to recharge my batteries.

Everyone needs a Sally!

Flat-lining batteries

It was wonderful to spend a week reconnecting with such an important part of my inner self, but incredibly hard to do it with flat-lining batteries after three years without a break. I returned with a beautiful creative piece - but I was absolutely drained, physically and mentally. And perhaps, in part, there was grief for what I had left behind, and sorrow for the lack of choice and personal freedom in my life, facing me full force on my return, taunting me with the glimpse I'd had of a world of other possibilities. And guilt. For having gone, and for having failed to come back renewed, refreshed, re-energised.

Becoming fully human

I love being with Euan, everything I do is for him or with him, but at times like this I realise what I have given up. I have to take strength from the Stoics' belief that care is how we become fully human (Bunting, 2021). My caring role is a burden I willingly bear, whatever I have had to put down in order to carry that load - but there are days when it gets to me, and reminds me that I really am fully human, warts and all!

A hidden army

• There could be as many as 8.8 million unpaid carers in the UK - 1 in 6 of the adult population

• The majority of carers are women

• By the age of 59 there is a 50-50 chance of a woman being a carer

• Men don’t have equivalent odds until they are 75

I am one of the lucky ones. I love and am loved and undertake my caring role willingly - I wouldn't have it any other way. But how much harder for all those who have to care for someone they don't even like and certainly haven't chosen to care for? And what about the 'sandwich generation' who have children to support and still have their parents alive and needing care and are possibly also caring for a spouse? At least I only now have Euan to worry about.

The importance of self-care

Regardless of each individual situation, this is a hidden army of folk, and who is caring for them? If we unpaid carers go under, what would happen to those we care for? How would the nation cope? Will I ever manage to spend my respite budget? Well-meaning friends keep saying, "Oh, Katie, you must get some respite organised, and let go for a while!" If only. I feel so lucky to have this budget, and would gladly spend it if I could. I am eternally grateful to Sally for rolling up her sleeves and stepping in on this occasion, but in reality, few folk have a Sally, or a budget, and self-care seems to be the only reliable source of support for carers, in a world of budget cuts and staff shortages.

I've written about self-care ideas for carers, I've blogged about practical things that might help carers day-to-day and how to cope emotionally, I've created pages on this website to help carers find support, I've contributed to the Parkinson's UK Scotland initiative to offer more support to carers. And today, I've had to withdraw from delivering the PUK seminar on selfcare that I created - as a pure act of self-care, recognising my own overload and risk of burnout. I'm not always good at self-care, but today I knew, respite or no respite, I had reached my limits.

Who pays the bills?

• Carer’s Allowance = £67.25 per week —> £1.90 per hour

• Carer’s Allowance is the lowest state benefit available

• Unpaid carers save the UK economy £132 BILLION per year, close to the annual cost of the NHS (2015 figures)

As one of an 8.8 million strong army saving the UK economy £132 billion a year, £1.90 per hour doesn't feel like a fair deal and doesn't leave me feeling greatly valued for my incredibly important role. Again, I am one of the lucky ones, we have additional income in the form of pensions and benefits to keep us afloat, but if we had to live only on CA and Euan's Personal Independence Payment (PIP), life would be hugely challenging.

Economic losses

So many carers are lost to the economy - the demands of their caring role often mean that full-time (and even part-time) work is impossible and they quietly slip away from economic view. In my forties I was needed to help support my parents at times of crisis, and my sister whose husband was terminally ill. As a freelance self-employed worker I had the flexibility to change some of my arrangements, but not without financial cost. Over the years I lost thousands of pounds of income and dozens of opportunities to share my expertise and grow my business.

Two jobs for the price of one?

Now, as a full-time carer in receipt of CA, I note that I would be permitted to earn up to something like £120 per week without jeopardising my allowance, but I really wonder where I would find the time and the energy to do that and ensure Euan is adequately cared for. And for all those who earn too much to be eligible for CA, I wonder if they feel they are propping up the state care system for free, doing two jobs for the price of one?

A 'Me Too' movement for carers...?

Madeleine Bunting laments the fact that a mere fraction of the energy and profile of the 'Me Too' movement would be enough to expose the scandalous care deficit - but I guess care is not 'sexy' and so does not stir up celebrities indignance in the same way.

What would it take to stir up public opinion enough to shame the powers that be into acknowledging the appalling financial and personal costs shouldered by this hidden army carers, an army that saves the government tens of billions of pounds each year, sacrificing so much to prop up the most vulnerable members of society for so little financial or personal return?

Who DOES care for the carers?

It's a debt that sorely needs to be repaid. If it would help, I for one would willingly stand up and say, 'Me too, I care about carers.' Would you? That way, I might be able to answer Euan's question. Who does care for the carers?

Moonrise over Arran - my 'respite' piece